Guest guest Posted June 23, 2001 Report Share Posted June 23, 2001 , You know, I can totally relate to what you say! Rich is the same way. But they told me in the NICU that guys handle things like this so differently. The want to know how things work in more concrete terms, but don't like to deal with details...sound familiar? If he only had a little clue how much paperwork and stuff that I do concerning ...and all the little things that we do to ensure that our children have the best of what they need... G JEFFREY FOLEY wrote: > Marilyn, > Thanks so much for your advice regarding Jeff. I usually just get mad at him > because if you sat him down and asked him what were Jillian's problems, like > what's her hearing loss, which heart defects does she have?, He has no > clue.I am always the one in control of Jillian and he only does it when I > can't . But I really needed your constructive critisism about how I was > treating Jeff. Thanks!!! > Foley > Re: Frightening encounter at the Dentist > > > Maybe you're being a bit hard on Jeff. One would have thgouth they would > > have a medical history on Jillian - she's been before, right? He probably > > thought they knew the medical stuff and knew what they were doing. > > You will drive yourself crazy if you try to do it all alone. And you my > > deny him the chance for some good one-on-one with her while in the waiting > > room! > > Just be sure Jeff knows that he needs to be sure the dentist - or anyone - > > knows Jillian's medical history and what to do with situations that may > crop > > up. Half the battle is being aware of what possible problems could > result. > > Rick has called me a pessimist before - I say I'm pragmatic and realistic. > > I think through all the " what might happen if... " scenarios and plan from > > there. If I've thought about it, I'm less likely to freak or react, > verses > > respond appropriately. > > > > There have been instances where I become the professional, and the service > > provider becomes the spectator. It just depends on the situation and how > > comfortable that particular person is with and her needs. > > > > I had a woman (retired nurse) watch one evening for a " date " with > > Rick. I told her that, due to allergy season being upon us, might > > get gaggy and just to pound on her chest until the mucous breaks up (which > > was no big deal, but I had to show her how hard to thump ). > > > obliged us with needing a demonstration before Rick and I left the house! > > The woman, even though trained in medical procedures, was glad it had > > occured before we left. She said she'd have called 911 if that had > > happened when we weren't home, because got really red faced and > just > > coughed, and coughed hard and seemed like she'd never stop - which she > > wouldn't if you don't start doing percussions on her chest and back. > > Another trick is to have raise her arms over her head as that > > expands the chest cavity and expands the diaphram. > > > > I know this is different with Jillian and her situation medically, but the > > key is being prepared. Jeff just probably didn't even think about telling > > them; and I'm sure it brought back painful memories if she looked like > > > as he was struggling for breath. > > > > Maybe the next time an appointment comes up you can both go and Jeff can > see > > how you handle the staff. Rick had no clue until he went with me a couple > > times. He thought you walked in, they do their thing, and you're on your > > way! What a lot he had to learn! And I had to learn to let him become > > competent. I'm not saying it was easy, but I am much more relaxed now > about > > Rick taking to appointments! > > > > Friends in CHARGE, > > Marilyn Ogan > > Mom of Ken (11) and (8, CHARGE) > > Wife of Rick (Mostly patient with me!) > > oganm@... > > marilyn@... > > > > > > 5th International CHARGE Syndrome Conference, Indianapolis, Indiana, > > July > > 20-22, 2001. Information is available at our website > > www.chargesyndrome.org or by calling 1-. > > > > > > For information about the CHARGE Syndrome > > Foundation or to become a member (and get the newsletter) > > please contact marion@... or visit > > the CHARGE Syndrome Foundation web page > > at http://www.chargesyndrome.org > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 24, 2001 Report Share Posted June 24, 2001 Ken, I am always telling Graeme how wonderful of a job I think he is doing with Kennedy too. He might not know every medical detail, but he is doing great with her in his way. He hasn't shied away from doing any of the medical stuff and that to me is so great. I can't expect him to know/remember every detail because he doesn't go to all the appointments with us and I probably forget to tell him some of them. We appreciate you dads, too! Mom to Kennedy 3yr old CHARGEr, 11, 10, and wife to Graeme New Brunswick, Canada Visit the Weir Homepage: http://www.geocities.com/kawfolks Re: Frightening encounter at the > Dentist > > > > > Maybe you're being a bit hard on Jeff. One > would have thgouth they would > > > have a medical history on Jillian - she's been > before, right? He probably > > > thought they knew the medical stuff and knew > what they were doing. > > > You will drive yourself crazy if you try to do > it all alone. And you my > > > deny him the chance for some good one-on-one > with her while in the waiting > > > room! > > > Just be sure Jeff knows that he needs to be sure > the dentist - or anyone - > > > knows Jillian's medical history and what to do > with situations that may > > crop > > > up. Half the battle is being aware of what > possible problems could > > result. > > > Rick has called me a pessimist before - I say > I'm pragmatic and realistic. > > > I think through all the " what might happen > if... " scenarios and plan from > > > there. If I've thought about it, I'm less > likely to freak or react, > > verses > > > respond appropriately. > > > > > > There have been instances where I become the > professional, and the service > > > provider becomes the spectator. It just depends > on the situation and how > > > comfortable that particular person is with > and her needs. > > > > > > I had a woman (retired nurse) watch one > evening for a " date " with > > > Rick. I told her that, due to allergy season > being upon us, might > > > get gaggy and just to pound on her chest until > the mucous breaks up (which > > > was no big deal, but I had to show her how hard > to thump ). > > > > > obliged us with needing a demonstration before > Rick and I left the house! > > > The woman, even though trained in medical > procedures, was glad it had > > > occured before we left. She said she'd have > called 911 if that had > > > happened when we weren't home, because > got really red faced and > > just > > > coughed, and coughed hard and seemed like she'd > never stop - which she > > > wouldn't if you don't start doing percussions on > her chest and back. > > > Another trick is to have raise her arms > over her head as that > > > expands the chest cavity and expands the > diaphram. > > > > > > I know this is different with Jillian and her > situation medically, but the > > > key is being prepared. Jeff just probably > didn't even think about telling > > > them; and I'm sure it brought back painful > memories if she looked like > > > > > as he was struggling for breath. > > > > > > Maybe the next time an appointment comes up you > can both go and Jeff can > > see > > > how you handle the staff. Rick had no clue > until he went with me a couple > > > times. He thought you walked in, they do their > thing, and you're on your > > > way! What a lot he had to learn! And I had to > learn to let him become > > > competent. I'm not saying it was easy, but I am > much more relaxed now > > about > > > Rick taking to appointments! > > > > > > Friends in CHARGE, > > > Marilyn Ogan > > > Mom of Ken (11) and (8, CHARGE) > > > Wife of Rick (Mostly patient with me!) > > > oganm@... > > > marilyn@... > > > > > > > > > 5th International CHARGE Syndrome Conference, > Indianapolis, Indiana, > > > July > > > 20-22, 2001. Information is available at our > website > > > www.chargesyndrome.org or by calling > 1-. > > > > > > > > > For information about the CHARGE Syndrome > > > Foundation or to become a member (and get the > newsletter) > > > please contact marion@... or > visit > > > the CHARGE Syndrome Foundation web page > > > at http://www.chargesyndrome.org > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 28, 2001 Report Share Posted June 28, 2001 With all this talk about husbands, it's got me thinking about mine. I think one of the gifts for us that has come from having Aubrie is that DJ and I have really learned to accept each other. We handled our grief very differently in the beginning --still do. And we handle all the issues differently. He sees many things from a different angle. We are in line on the basic concepts and beliefs about things so we don't argue about general stuff -- like inclusion or not or whether she's " ok " or not. You know what I mean? But he is not a " research til you drop " kind of person -- and I obviously am :-) He doesn't go to the appts. But he listens to me tell him everything I feel the need to say after a day of appts. When I listen to him tell someone else about stuff, he often has something inaccurate. But he wasn't there and he's trying. I don't resent being the one to " do " everything because he is working and simply can't. I am fortunate to be a stay-at-home mom. I'm sure I'd have resentment if we were both working full-time and I still did everything related to her care. He is quick to take her with him when he runs an errand or whatever. He is very close to her but just not with her daily for all the appts like I am. I have really learned to see that his reaction to things, his grief process, his method of approaching the educational and medical issues are all ok. He is very different from me, but he's not wrong. I used to think my way was right and he couldn't be right too. Now I have truly learned acceptance. I'm not sure that would have happened so quickly for us without Aubrie. I just finished reading " The Divine Secrets of the Ya-Ya Sisterhood " . There's a line in there to the effect that love is not about understanding, but rather about acceptance. It's not up to us to understand others, but to accept them even when we don't understand. That's an important part of what I've learned. Michele W Aubrie's mom (3.5 yrs) Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 29, 2001 Report Share Posted June 29, 2001 You guys, I am , I guess the one that started the whole issues on husbands and I have to add one more comment and ask if any of you are dealing with this particular angle,. (possibly not because we have had 2 CHARGErs from one end of the spectrum to the other).... Here is how much I have a hard time accepting how Jeff feels......... He wants to get Jillian UNDIAGNOSED with CHARGE becasue he thinks we can get better insurance for her and he thinks that label has ruined us !!!! i'm sorry but my brain does not seem to comprehend that mentality... I keep saying to him......okay, so, she does " not " have CHARGE but that does NOT illiminate the heart defects, the developmental delays, the ENT visits and ear tubes for probably life, the hearing loss, the speech delays, etc, etc, etc.......He just does NOT get it!!!! He sees CHARGE as our son who died... He thinks ALL CHARGE kids are totally messed up and Jillian just doesn't fit into that category.... Thats' one reason I am so anxious for him to come to this conference in Indy so he can see first hand how awesome these kids are!!!!! He drives me nuts with his ignorance and not wanting to learn to lose the ignorance.... Please don't get me wrong... I love my husband, he's a wonderful man.... but I guess that's the answer.... He's a man....... God created us differently.... we think differently and maybe I am the stubborn one that needs to accept his strange philosophy, but come on' now, " undiagnose " her..................????????? CHARGE is an explanation that Jillian is the way she is.. She seems so " normal " Yet i was at the pool with friends last night and I made the comment to my friend, " These are the times that I realize that Jillian is different than other kids. " .... Jillian is 3 years 3months old..... and there were 1 1/2 year old kids running in the baby pool like it was nothing and Jillian has little equilibrium so although she can walk on land, add water and it throws her all off so she's scared to death!!! She LOVES the water, but needs to hold 2 hands, sometimes one, but more comfortable with 2, in order to walk in a baby pool up to her knees....... I guess Jeff just wants to look at her as a normal kid that needs ear tubes, then another " normal " kid might have a heart defect, then another " normal " kid might only be 24 lbs at her age, but combine all the " problems " ....it's CHARGE !! Why not just say it, instead on turning your back on a " label " .... CHARGE is in our life, we watched a child die from it and we watch a child live with it.... So I guess I just don't get why he still wants to ignore it!! Sorry to ramble and vent, but he drives me crazy, but I love him with all my heart!!! And he LOVES Jillian with all his !!! Foley, Crazy wife to Jeff and mother to 5, ( my little CHARGE angel in heaven) and Jillian cHaRGE 3 re: husbands > With all this talk about husbands, it's got me thinking about mine. I > think one of the gifts for us that has come from having Aubrie is that > DJ and I have really learned to accept each other. We handled our grief > very differently in the beginning --still do. And we handle all the > issues differently. He sees many things from a different angle. We are > in line on the basic concepts and beliefs about things so we don't argue > about general stuff -- like inclusion or not or whether she's " ok " or > not. You know what I mean? > > But he is not a " research til you drop " kind of person -- and I > obviously am :-) He doesn't go to the appts. But he listens to me tell > him everything I feel the need to say after a day of appts. When I > listen to him tell someone else about stuff, he often has something > inaccurate. But he wasn't there and he's trying. I don't resent being > the one to " do " everything because he is working and simply can't. I am > fortunate to be a stay-at-home mom. I'm sure I'd have resentment if we > were both working full-time and I still did everything related to her > care. He is quick to take her with him when he runs an errand or > whatever. He is very close to her but just not with her daily for all > the appts like I am. > > I have really learned to see that his reaction to things, his grief > process, his method of approaching the educational and medical issues > are all ok. He is very different from me, but he's not wrong. I used > to think my way was right and he couldn't be right too. Now I have > truly learned acceptance. I'm not sure that would have happened so > quickly for us without Aubrie. > > I just finished reading " The Divine Secrets of the Ya-Ya Sisterhood " . > There's a line in there to the effect that love is not about > understanding, but rather about acceptance. It's not up to us to > understand others, but to accept them even when we don't understand. > That's an important part of what I've learned. > > Michele W > Aubrie's mom (3.5 yrs) > > > 5th International CHARGE Syndrome Conference, Indianapolis, Indiana, > July > 20-22, 2001. Information is available at our website > www.chargesyndrome.org or by calling 1-. > > > For information about the CHARGE Syndrome > Foundation or to become a member (and get the newsletter) > please contact marion@... or visit > the CHARGE Syndrome Foundation web page > at http://www.chargesyndrome.org > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 29, 2001 Report Share Posted June 29, 2001 F- I can't totally relate since your situation is different than anything I've experienced. However, I too would think that experiencing the conference will help Jeff to see the reality of CHARGE. I know that meeting all the families in Houston had a profound impact on me. DJ has been to a deafblind conference in Indy with Dr. Davenport so he also saw many children with CHARGE and has an understanding of what it can involve. DJ also chooses to see the positive side of things. For instance, he might think that I'm making too big a deal of something that he considers just a " normal " thing. I can't think of a concrete example right now, but hopefully you get what I mean. But he isn't in denial about her problems. He won't learn sign language because he thinks she'll talk enough that he won't have to. He talks to her now and they communicate fine -- especially with me as interpreter. I don't worry about that because I also hope that he'll never really have to. And if he does, then I believe he will when the time comes. Anyway, I can see why you are frustrated. I would also have a hard time accepting Jeff's perspective. Continue to be patient while gently pushing him towards reality. I know we will all look forward to meeting him in Indy. I think we can all understand his feelings and we'll be gentle with him. Hopefully, by seeing all the other kids, he'll come to understand the wide range of CHARGE. Seeing some of the older kids really made me feel like I could cope with my future as Aubrie's mom. It gave me a little window into the future and it wasn't nearly as frightening as I'd imagined. I could ramble on and on, but I won't :-) Looking forward to seeing you guys! Michele W Aubrie's mom Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 29, 2001 Report Share Posted June 29, 2001 karen, I relate totally!! Timmy has a very mild case of charge--some people don't even realize there's anything " wrong " I hate that word, but.... with him until he speaks, and stutters, or it isn't clear, or he walks and his gait is funny, or he falls down. things like that. Pat and I feel very blessed that he is so mild, but there still is some deniel there too, and anger, etc. maybe that is what Jeff feels. Or maybe since you lost one charger he doesn't want to put her in that category over fear of losing her too. pat is the same with dr.s too, I do it all unless I need him there for extra support, and alot of times his mom goes, cause she can get time off work. but, God forbid anything ever happens to me, he wouldn't know where to begin. and I guess that is as much my fault as his--control factor here, and probably not wanting to deal with it for him. hopefully the conference will help them both, and us too!!! re: husbands > > > > With all this talk about husbands, it's got me thinking about mine. I > > think one of the gifts for us that has come from having Aubrie is that > > DJ and I have really learned to accept each other. We handled our grief > > very differently in the beginning --still do. And we handle all the > > issues differently. He sees many things from a different angle. We are > > in line on the basic concepts and beliefs about things so we don't argue > > about general stuff -- like inclusion or not or whether she's " ok " or > > not. You know what I mean? > > > > But he is not a " research til you drop " kind of person -- and I > > obviously am :-) He doesn't go to the appts. But he listens to me tell > > him everything I feel the need to say after a day of appts. When I > > listen to him tell someone else about stuff, he often has something > > inaccurate. But he wasn't there and he's trying. I don't resent being > > the one to " do " everything because he is working and simply can't. I am > > fortunate to be a stay-at-home mom. I'm sure I'd have resentment if we > > were both working full-time and I still did everything related to her > > care. He is quick to take her with him when he runs an errand or > > whatever. He is very close to her but just not with her daily for all > > the appts like I am. > > > > I have really learned to see that his reaction to things, his grief > > process, his method of approaching the educational and medical issues > > are all ok. He is very different from me, but he's not wrong. I used > > to think my way was right and he couldn't be right too. Now I have > > truly learned acceptance. I'm not sure that would have happened so > > quickly for us without Aubrie. > > > > I just finished reading " The Divine Secrets of the Ya-Ya Sisterhood " . > > There's a line in there to the effect that love is not about > > understanding, but rather about acceptance. It's not up to us to > > understand others, but to accept them even when we don't understand. > > That's an important part of what I've learned. > > > > Michele W > > Aubrie's mom (3.5 yrs) > > > > > > 5th International CHARGE Syndrome Conference, Indianapolis, Indiana, > > July > > 20-22, 2001. Information is available at our website > > www.chargesyndrome.org or by calling 1-. > > > > > > For information about the CHARGE Syndrome > > Foundation or to become a member (and get the newsletter) > > please contact marion@... or visit > > the CHARGE Syndrome Foundation web page > > at http://www.chargesyndrome.org > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 29, 2001 Report Share Posted June 29, 2001 God forbid anything ever happens to me, he wouldn't know where to begin. and I guess that is as much my fault as his--control factor here, and probably not wanting to deal with it for him. , I have a friend that already knnows if anything were to ever happen to me, that she would be responsible for telling Jeff about Jillian's appointments. When, Where, Which doctor, etc.... She knows all that stuff better than Jeff. Foley re: husbands > > > > > > > With all this talk about husbands, it's got me thinking about mine. I > > > think one of the gifts for us that has come from having Aubrie is that > > > DJ and I have really learned to accept each other. We handled our grief > > > very differently in the beginning --still do. And we handle all the > > > issues differently. He sees many things from a different angle. We are > > > in line on the basic concepts and beliefs about things so we don't argue > > > about general stuff -- like inclusion or not or whether she's " ok " or > > > not. You know what I mean? > > > > > > But he is not a " research til you drop " kind of person -- and I > > > obviously am :-) He doesn't go to the appts. But he listens to me tell > > > him everything I feel the need to say after a day of appts. When I > > > listen to him tell someone else about stuff, he often has something > > > inaccurate. But he wasn't there and he's trying. I don't resent being > > > the one to " do " everything because he is working and simply can't. I am > > > fortunate to be a stay-at-home mom. I'm sure I'd have resentment if we > > > were both working full-time and I still did everything related to her > > > care. He is quick to take her with him when he runs an errand or > > > whatever. He is very close to her but just not with her daily for all > > > the appts like I am. > > > > > > I have really learned to see that his reaction to things, his grief > > > process, his method of approaching the educational and medical issues > > > are all ok. He is very different from me, but he's not wrong. I used > > > to think my way was right and he couldn't be right too. Now I have > > > truly learned acceptance. I'm not sure that would have happened so > > > quickly for us without Aubrie. > > > > > > I just finished reading " The Divine Secrets of the Ya-Ya Sisterhood " . > > > There's a line in there to the effect that love is not about > > > understanding, but rather about acceptance. It's not up to us to > > > understand others, but to accept them even when we don't understand. > > > That's an important part of what I've learned. > > > > > > Michele W > > > Aubrie's mom (3.5 yrs) > > > > > > > > > 5th International CHARGE Syndrome Conference, Indianapolis, Indiana, > > > July > > > 20-22, 2001. Information is available at our website > > > www.chargesyndrome.org or by calling 1-. > > > > > > > > > For information about the CHARGE Syndrome > > > Foundation or to become a member (and get the newsletter) > > > please contact marion@... or visit > > > the CHARGE Syndrome Foundation web page > > > at http://www.chargesyndrome.org > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 30, 2001 Report Share Posted June 30, 2001 I do have a list of drs. etc written down that guardians, and grandparents have in case anything were to happen to us, so I guess he would be ok, just would need some help figuring it all out. let's just hope we don't have to worry about it--any of us!! I do creative memories too, isn't it great? Pat thinks I'm obsessed! maria re: husbands > > > > > > > > > > With all this talk about husbands, it's got me thinking about mine. I > > > > think one of the gifts for us that has come from having Aubrie is that > > > > DJ and I have really learned to accept each other. We handled our > grief > > > > very differently in the beginning --still do. And we handle all the > > > > issues differently. He sees many things from a different angle. We > are > > > > in line on the basic concepts and beliefs about things so we don't > argue > > > > about general stuff -- like inclusion or not or whether she's " ok " or > > > > not. You know what I mean? > > > > > > > > But he is not a " research til you drop " kind of person -- and I > > > > obviously am :-) He doesn't go to the appts. But he listens to me > tell > > > > him everything I feel the need to say after a day of appts. When I > > > > listen to him tell someone else about stuff, he often has something > > > > inaccurate. But he wasn't there and he's trying. I don't resent > being > > > > the one to " do " everything because he is working and simply can't. I > am > > > > fortunate to be a stay-at-home mom. I'm sure I'd have resentment if > we > > > > were both working full-time and I still did everything related to her > > > > care. He is quick to take her with him when he runs an errand or > > > > whatever. He is very close to her but just not with her daily for all > > > > the appts like I am. > > > > > > > > I have really learned to see that his reaction to things, his grief > > > > process, his method of approaching the educational and medical issues > > > > are all ok. He is very different from me, but he's not wrong. I used > > > > to think my way was right and he couldn't be right too. Now I have > > > > truly learned acceptance. I'm not sure that would have happened so > > > > quickly for us without Aubrie. > > > > > > > > I just finished reading " The Divine Secrets of the Ya-Ya Sisterhood " . > > > > There's a line in there to the effect that love is not about > > > > understanding, but rather about acceptance. It's not up to us to > > > > understand others, but to accept them even when we don't understand. > > > > That's an important part of what I've learned. > > > > > > > > Michele W > > > > Aubrie's mom (3.5 yrs) > > > > > > > > > > > > 5th International CHARGE Syndrome Conference, Indianapolis, Indiana, > > > > July > > > > 20-22, 2001. Information is available at our website > > > > www.chargesyndrome.org or by calling 1-. > > > > > > > > > > > > For information about the CHARGE Syndrome > > > > Foundation or to become a member (and get the newsletter) > > > > please contact marion@... or visit > > > > the CHARGE Syndrome Foundation web page > > > > at http://www.chargesyndrome.org > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 30, 2001 Report Share Posted June 30, 2001 OK, my turn! When Patty was little I did absolutely everything! didn't even know the name of her doctors. When operations came up he was there but for all other appointments and stuff, I did them-ALL. You might say it was a control thing. But then again there were so many different issues going on someone had to keep them straight. There were a couple of times he had to take her to a doctors appointment and when he got home he seldom came with all the information. I can give you things almost verbatim. He forgets. Now he takes her sometimes, and a does too. It is Patty who gives me the important information now. We are not dealing with such major health issues so I can let go and he can be more involved. I didn't mind when she was little because at that time I had a daycare and was home for the girls. He worked from 7 to 7. Then, when he came home he took over. He also has a different relationship with the girls. They used to go on special "dates" with him. This included even taking turns going to the dump on Saturdays. They actually wanted to! Weird but who cared. He still frustrates me sometimes but that is only because he IS A MAN. Some things are not as important to him as they are to me. He just sees the world in a different way. And then there are the times when I don't think he has a clue about Patty's needs and he comes up with something so profound, or something so totally obvious, I could kick myself for not knowing. I know I could never have done this without him. I also know she would not be as far as she is without him. Bonnie, Mom to Kris 18, Patty CHARGE 16, and wife to Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 1, 2001 Report Share Posted July 1, 2001 or , Could you please tell me what Creative Memories is? I have never heard of that! Tia mom to age 12 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 2, 2001 Report Share Posted July 2, 2001 , I really feel for you, that would be difficult, the wanting to "un-diagnose" her from CHARGE. I hope seeing all those little wonders in Indy brings him around. I can kind of see his way of thinking though, he equates CHARGE with losing and is frightened that Jillian having CHARGE will have the same ramifications as had. Hugs, Mom to Kennedy 3yr old CHARGEr, 11, 10, and wife to GraemeNew Brunswick, CanadaVisit the "Weir homepage" at: http://www.geocities.com/SunsetStrip/Palms/5716ICQ #1426476 re: husbands> With all this talk about husbands, it's got me thinking about mine. I> think one of the gifts for us that has come from having Aubrie is that> DJ and I have really learned to accept each other. We handled our grief> very differently in the beginning --still do. And we handle all the> issues differently. He sees many things from a different angle. We are> in line on the basic concepts and beliefs about things so we don't argue> about general stuff -- like inclusion or not or whether she's "ok" or> not. You know what I mean?>> But he is not a "research til you drop" kind of person -- and I> obviously am :-) He doesn't go to the appts. But he listens to me tell> him everything I feel the need to say after a day of appts. When I> listen to him tell someone else about stuff, he often has something> inaccurate. But he wasn't there and he's trying. I don't resent being> the one to "do" everything because he is working and simply can't. I am> fortunate to be a stay-at-home mom. I'm sure I'd have resentment if we> were both working full-time and I still did everything related to her> care. He is quick to take her with him when he runs an errand or> whatever. He is very close to her but just not with her daily for all> the appts like I am.>> I have really learned to see that his reaction to things, his grief> process, his method of approaching the educational and medical issues> are all ok. He is very different from me, but he's not wrong. I used> to think my way was right and he couldn't be right too. Now I have> truly learned acceptance. I'm not sure that would have happened so> quickly for us without Aubrie.>> I just finished reading "The Divine Secrets of the Ya-Ya Sisterhood".> There's a line in there to the effect that love is not about> understanding, but rather about acceptance. It's not up to us to> understand others, but to accept them even when we don't understand.> That's an important part of what I've learned.>> Michele W> Aubrie's mom (3.5 yrs)>>> 5th International CHARGE Syndrome Conference, Indianapolis, Indiana,> July> 20-22, 2001. Information is available at our website> www.chargesyndrome.org or by calling 1-.>>> For information about the CHARGE Syndrome> Foundation or to become a member (and get the newsletter)> please contact marion@... or visit> the CHARGE Syndrome Foundation web page> at http://www.chargesyndrome.org>> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 2, 2001 Report Share Posted July 2, 2001 , There's NO WAY you are more obsessed with Creative Memories than me!!!! I couldn't imagine anyone is!! I bet i spend $200-$300 a month on stickers, books and supplies!! Foley re: husbands > > > > > > > > > > > > > With all this talk about husbands, it's got me thinking about mine. > I > > > > > think one of the gifts for us that has come from having Aubrie is > that > > > > > DJ and I have really learned to accept each other. We handled our > > grief > > > > > very differently in the beginning --still do. And we handle all the > > > > > issues differently. He sees many things from a different angle. We > > are > > > > > in line on the basic concepts and beliefs about things so we don't > > argue > > > > > about general stuff -- like inclusion or not or whether she's " ok " > or > > > > > not. You know what I mean? > > > > > > > > > > But he is not a " research til you drop " kind of person -- and I > > > > > obviously am :-) He doesn't go to the appts. But he listens to me > > tell > > > > > him everything I feel the need to say after a day of appts. When I > > > > > listen to him tell someone else about stuff, he often has something > > > > > inaccurate. But he wasn't there and he's trying. I don't resent > > being > > > > > the one to " do " everything because he is working and simply can't. > I > > am > > > > > fortunate to be a stay-at-home mom. I'm sure I'd have resentment if > > we > > > > > were both working full-time and I still did everything related to > her > > > > > care. He is quick to take her with him when he runs an errand or > > > > > whatever. He is very close to her but just not with her daily for > all > > > > > the appts like I am. > > > > > > > > > > I have really learned to see that his reaction to things, his grief > > > > > process, his method of approaching the educational and medical > issues > > > > > are all ok. He is very different from me, but he's not wrong. I > used > > > > > to think my way was right and he couldn't be right too. Now I have > > > > > truly learned acceptance. I'm not sure that would have happened so > > > > > quickly for us without Aubrie. > > > > > > > > > > I just finished reading " The Divine Secrets of the Ya-Ya > Sisterhood " . > > > > > There's a line in there to the effect that love is not about > > > > > understanding, but rather about acceptance. It's not up to us to > > > > > understand others, but to accept them even when we don't understand. > > > > > That's an important part of what I've learned. > > > > > > > > > > Michele W > > > > > Aubrie's mom (3.5 yrs) > > > > > > > > > > > > > > > 5th International CHARGE Syndrome Conference, Indianapolis, Indiana, > > > > > July > > > > > 20-22, 2001. Information is available at our website > > > > > www.chargesyndrome.org or by calling 1-. > > > > > > > > > > > > > > > For information about the CHARGE Syndrome > > > > > Foundation or to become a member (and get the newsletter) > > > > > please contact marion@... or visit > > > > > the CHARGE Syndrome Foundation web page > > > > > at http://www.chargesyndrome.org > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 2, 2001 Report Share Posted July 2, 2001 Tia, Creative Memories is a company that sells scrapbooking articles to make awesome photo albums. I just started into less than a year ago. I wish I had known about it sooner because I have almost 6 years of pictures to catch up on with . Over 3 years of pictures with Jillian and I plan on making a special " " album. I am also goong to make a CHARGE Syndroem album for all the conferences, but it takes SOOOOOOO much time and who has alot of that???? Both and Jillian have school albums(I will bring Jillian's to the conference if I remember) I can't believe the conference is THIS MONTH!!!! YAHOO!!!!!!! Foley Re: re: husbands > or , > Could you please tell me what Creative Memories is? I have never heard of > that! > Tia mom to age 12 > > 5th International CHARGE Syndrome Conference, Indianapolis, Indiana, > July > 20-22, 2001. Information is available at our website > www.chargesyndrome.org or by calling 1-. > > > For information about the CHARGE Syndrome > Foundation or to become a member (and get the newsletter) > please contact marion@... or visit > the CHARGE Syndrome Foundation web page > at http://www.chargesyndrome.org > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 2, 2001 Report Share Posted July 2, 2001 Iris, NO Hobby Lobby around here!! Foley Re: re: husbands & , Do you have a Hobby Lobby close by? They have all the scrapbook supplies 1/2 off starting July 2nd. I saw it in the newspaper today!! That might help with the budget. Iris 5th International CHARGE Syndrome Conference, Indianapolis, Indiana,July20-22, 2001. Information is available at our websitewww.chargesyndrome.org or by calling 1-.For information about the CHARGE Syndrome Foundation or to become a member (and get the newsletter)please contact marion@... or visit the CHARGE Syndrome Foundation web page at http://www.chargesyndrome.org Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 2, 2001 Report Share Posted July 2, 2001 Tia, creative memories is photo scrapbooking, you can make it as creavite as youlike and you also journal, so whomever is looking at the book know who, what where, etc. it's addictive and wonderful as an outlet for me. sort of like calgon... maria Re: re: husbands > or , > Could you please tell me what Creative Memories is? I have never heard of > that! > Tia mom to age 12 > > 5th International CHARGE Syndrome Conference, Indianapolis, Indiana, > July > 20-22, 2001. Information is available at our website > www.chargesyndrome.org or by calling 1-. > > > For information about the CHARGE Syndrome > Foundation or to become a member (and get the newsletter) > please contact marion@... or visit > the CHARGE Syndrome Foundation web page > at http://www.chargesyndrome.org > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 2, 2001 Report Share Posted July 2, 2001 you are right, but, if i had the money and the time I would!! maria re: husbands > > > > > > > > > > > > > > > > With all this talk about husbands, it's got me thinking about > mine. > > I > > > > > > think one of the gifts for us that has come from having Aubrie is > > that > > > > > > DJ and I have really learned to accept each other. We handled our > > > grief > > > > > > very differently in the beginning --still do. And we handle all > the > > > > > > issues differently. He sees many things from a different angle. > We > > > are > > > > > > in line on the basic concepts and beliefs about things so we don't > > > argue > > > > > > about general stuff -- like inclusion or not or whether she's " ok " > > or > > > > > > not. You know what I mean? > > > > > > > > > > > > But he is not a " research til you drop " kind of person -- and I > > > > > > obviously am :-) He doesn't go to the appts. But he listens to > me > > > tell > > > > > > him everything I feel the need to say after a day of appts. When > I > > > > > > listen to him tell someone else about stuff, he often has > something > > > > > > inaccurate. But he wasn't there and he's trying. I don't resent > > > being > > > > > > the one to " do " everything because he is working and simply can't. > > I > > > am > > > > > > fortunate to be a stay-at-home mom. I'm sure I'd have resentment > if > > > we > > > > > > were both working full-time and I still did everything related to > > her > > > > > > care. He is quick to take her with him when he runs an errand or > > > > > > whatever. He is very close to her but just not with her daily for > > all > > > > > > the appts like I am. > > > > > > > > > > > > I have really learned to see that his reaction to things, his > grief > > > > > > process, his method of approaching the educational and medical > > issues > > > > > > are all ok. He is very different from me, but he's not wrong. I > > used > > > > > > to think my way was right and he couldn't be right too. Now I > have > > > > > > truly learned acceptance. I'm not sure that would have happened > so > > > > > > quickly for us without Aubrie. > > > > > > > > > > > > I just finished reading " The Divine Secrets of the Ya-Ya > > Sisterhood " . > > > > > > There's a line in there to the effect that love is not about > > > > > > understanding, but rather about acceptance. It's not up to us to > > > > > > understand others, but to accept them even when we don't > understand. > > > > > > That's an important part of what I've learned. > > > > > > > > > > > > Michele W > > > > > > Aubrie's mom (3.5 yrs) > > > > > > > > > > > > > > > > > > 5th International CHARGE Syndrome Conference, Indianapolis, > Indiana, > > > > > > July > > > > > > 20-22, 2001. Information is available at our website > > > > > > www.chargesyndrome.org or by calling 1-. > > > > > > > > > > > > > > > > > > For information about the CHARGE Syndrome > > > > > > Foundation or to become a member (and get the newsletter) > > > > > > please contact marion@... or visit > > > > > > the CHARGE Syndrome Foundation web page > > > > > > at http://www.chargesyndrome.org > > > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 2, 2001 Report Share Posted July 2, 2001 wish there was!! Re: re: husbands & , Do you have a Hobby Lobby close by? They have all the scrapbook supplies 1/2 off starting July 2nd. I saw it in the newspaper today!! That might help with the budget. Iris 5th International CHARGE Syndrome Conference, Indianapolis, Indiana,July20-22, 2001. Information is available at our websitewww.chargesyndrome.org or by calling 1-.For information about the CHARGE Syndrome Foundation or to become a member (and get the newsletter)please contact marion@... or visit the CHARGE Syndrome Foundation web page at http://www.chargesyndrome.org Quote Link to comment Share on other sites More sharing options...
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